Knowing who to involve, and how to involve them

When a person has a spinal cord injury, it affects the lives of all those around them. It also introduces them to new communities, in that they receive an inevitable flood of support from different professionals. For a school hoping to positively include a student with a spinal cord injury into their community, early preparation and planning for return is vital and the following should be considered:

·      How to connect and provide continuity when a child is in hospital

·      Knowing who to involve

·      Using Early Help Assessments

·      Applying for an Education Health Care Plan

When a child or young person is in hospital

Schools should attempt to connect with the hospital soon after the child or young person arrives there. Early contact is important, as is setting a time frame for their return. This early connection will also help make the transition out of the hospital and back to school an easier one.

Try to provide continuity for the child when they return to the same school.

To maintain educational development, school staff and teachers can liaise with hospital teaching staff in order to help the child or young person stay up to date with the curriculum and aligned with what other children are doing. Involving parents in this communication as well has also been shown to be helpful for families and children.

If there are siblings in the same school system, schools should also be aware of the situation the brother and/or sister are going through. Some will be anxious about their sibling and will be undergoing significant disruption and adjustment in their family and social lives.

“Most young people will have a ‘contact booklet’ of everyone who is involved, both in specialist centres and in the community. They are advised to have that and keep it up-to-date and usually the schools have that information as well [though it can be] variable across the country.”

Angela Gall, Consultant, London Spinal Cord Injury Centre, Stanmore

When a child or young person leaves hospital

Once a child or young person is discharged from hospital, it is likely most of their health needs will be dealt with by a community health team. Some spinal cord injury centres continue to see children and young people once or twice a year for a multi-disciplinary review. Children and young people often also have occasional visits with health staff during summer holidays to continue development.

The psychology department at a spinal cord injury centre will also likely conduct routine reviews with a child or young person to gauge any new issues arising as they go through different developmental stages. This may involve issues like body image and relationships and sexuality when reaching adolescence, so it can be useful to engage these departments as required.

Voluntary agencies that specialise in work with people with spinal cord injuries, inclusion or working with disabled young people are good contacts for supporting the inclusion process. In particular, Back Up offers a mentoring scheme for young people with spinal cord injury to have the opportunity to talk to another young person who also has a spinal cord injury and have had similar experiences.

“I had a mentor from Back Up. I found it easier to talk to someone who had some experience of a spinal injury, who was roughly the same level injury as me and the same age. She has been injured for four years more than me. She helped me with any questions I had, how things were going to work like driving, different transfers (like getting in and out of the car) and things like that. I talked to her for about a year. My mentor helped me realise that life doesn’t stop, that it keeps going and that I shouldn’t stop myself doing anything, as I can do anything I want to do, just adapted in different ways. ”

Danielle, 17

Knowing who to involve

A child or young person with a spinal cord injury will suddenly be surrounded by a group of professionals who are now part of their lives. These professionals will come from different sectors (health, education, social care) and will likely share a similar goal of supporting the young person but will also have different priorities or ideas about how to achieve this.

“One of the things that I’ve found that works particularly well is having a holistic approach at supporting disabled children in schools. It’s not just partnership of the parent and the school and the child. But it’s the partnership of the medical teams, social services, and educational people, etc. The successful examples of inclusive practice that are working for a young person are where you’ve got lots of agencies and individuals working together for the best interests of the young person.”

Dr. Phil Vickerman, Professor of Inclusive Education and Learning, Liverpool John Moores University

This increased attention can be overwhelming and difficult to manage for the family and the child or young person. Schools can help coordinate the involvement of different professionals to make it more effective and easier for the child or young person.

“Following our student’s trauma, she was surrounded by a lot of professionals involved in her rehabilitation and the process of integrating back into home and school life. The presence of so many people is to help but it can also be overwhelming. At school we were aware that this can all be ‘a bit much’. We felt it was important to encourage our student to make her own decisions and express her views but only when she specifically wished.”

SENCO, Gloucestershire

Education Health Care Plans or EHCPs

The process of applying for an Education Health Care Plan should start as soon as possible.

A lead professional such as SENCO or parent can request an Education Health Care assessment from their Local Authority. This EHCP will then coordinate support across health, education and social services for that child and according to the plan. The general process of applying for an EHCP requires an assessment at local authority level, with the help and involvement of specialists such as nurses, physios, OTs and educational psychologists.